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kfrank 03-25-2013 06:07 AM

4 year old daughter surgery
My daughter has a hemangioma on her lower lip. It was growing rapidly and ulcerated leaving her lip pretty deformed. It stopped growing years ago because of (we believe) the propanolol treatment she received. She is now 4, and we are scheduled to have surgery to remove a portion of it this week. Both my wife and I are having second thoughts about going through with the procedure since it will not remove all of the hemangioma and the doctor says it will still be noticeable and that the surgery will leave a small vertical scar. Has anyone gone through with a procedure like this? If so do you have any advice or recommendations on how to proceed? I have included 2 pictures of her lip for reference.

smurph 03-26-2013 03:42 AM

I wish I had more info to give you. My daughter had surgery on her lip hemanioma but it was her upper lip and a different situation. Where are you having the surgery done? Maybe you could get a second opinion just to get some peace of mind. OR you could email Dr. Levitin on the Ask the Expert panel here and see if he can give you his thoughts. Good luck! Keep us posted!

kfrank 03-27-2013 10:32 PM

Sent him a message on Sunday night
I still haven't heard back. We are pretty sure we are going to go though with it at this point. I talked to my daughter about it and she gave me a lot more confidence that this is the right thing to do. I still would find any experiences others have had useful.

smurph 03-28-2013 02:15 AM

Do you mean you emailed the doctors and didn't hear back? Sometimes it takes a few days. If it makes you feel any better, I ALWAYS had second thoughts about my daughter's procedures-her surgery and both lasers. And she always took things in stride while I was a wreck. My daughter's surgery was on her upper lip and her stitches were straight up and down (vertically) on her lip. She had just turned 5 when she had it done. You cannot even see the scar at all. Your daughters may be much different due to the location, but I thought I'd show you these pictures just for your reference so you can see how her lip healed:

Good luck with the surgery. I'll be thinking of you.


kfrank 03-28-2013 02:51 AM

Thank you, SMurph
My husband posted this thread, but your generosity in sharing your daughter's pictures has helped me calm down so much. I know that my daughter's is a bit more extreme, since hers hasn't faded or shrunk much, but just the fact that your gorgeous daughter was brave through it all, and had the same feelings as my daughter and that now your (still) gorgeous daughter has no noticeable hemangioma makes me much calmer. Thank you! From the bottom of my heart, thank you. God has used you in my life.

smurph 03-29-2013 01:54 AM

I just read your reply to my daughter Faith (she's 8 now) and she had the hugest smile on her face! There were a few people who were so helpful to me when we were in your stage and I just am sooo happy that we can help others now. Really, your email made me smile/almost cry, because I feel like it's all been worth it. That's why I truly believe in online groups like this and that is why I have stayed involved. I'm not sure when your daughter's surgery is, but I will pray for her tomorrow. God bless you and your precious girl! :)

Kdiperi 06-02-2013 05:33 AM

Was curious if you had the surgery done . My wife and I have a little girl who had a severe rapid ulcerating hemangioma on her lower lip in the exact same spot . Our daughters was much larger and we had the first debulk surgery roughly 9 months ago and we have under gone a laser treatment about a month ago . It's 100000000% better definitely worth it . We have ( what we hope to be ) the final procedure on October 10 which will be to remove the residual hemangioma and some light scar issue and the final laser treatment .

We have been going through this since she was 6 months old . And we finally see the light of hopefully being hemangioma free . It's a hard road if someone doesn't understand it hope your surgery went well

kelly007 08-02-2015 12:43 AM

Hi there. This is an older thread but just wondering if any of you could contact me regarding how you got on with your childrens hemangiomas. My daughter has one in the same spot. We are considering surgery.
Many thanks

kfrank 08-02-2015 03:17 AM

Sent an email with an update (and pictures).

Ginorocco1 08-08-2015 02:12 PM

Hello all! My son 5 yr old son has a lower lip AVM! They thought it was an hemangioma but it was an AVM! I would love to share our journey if anyone needs help!

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